Use of Electronically Integrated Databases for
Surveillance and Follow-Up of Children with Special Health care Needs
Bill Letson: Yeah, and
there’s potential, as well, to do EPI studies with it. Right now what we have is--most of what you
saw in CHIRP is actually at the University Of Colorado Health Sciences Center
and we’re getting consent for anyone who has a diagnosis that comes from the
screening process that ends up in this system, we’re actually getting formal
consent that’s gone through the IRB process at the University. The Health Department IRB, interestingly
enough, exempted the whole process, gave it a public health exemption. If we ever do EPI research, and especially
if it’s publishable, the University takes the point of view that that would
require special IRB approval, so each and every time we go to the well, we’ll
have to deal with the IRB.
Unidentified Speaker: IRB? I’m sorry?
Unidentified Speaker: The
Institutional Review Board. It’s
considered formal research by the University.
Not so much by the Health Department in our context, but since the
University is one of our multiple partners, which I was going to say something
about quickly here, we have to deal with that and we do anticipate doing EPI
research and using this as a surveillance tool.
Unidentified Speaker:
(Inaudible).
Unidentified Speaker: Actually, I
don’t envision that. We sort of see
part of the advantage in this whole thing is that it’s just sort of a marvelous
partnership and to try to--whoops, I can’t illustrate it that way, can I? Ah, geez?
Well, anyway, this is also in your handout. It’s kind of unreadable up here, but I was going to flip this up
just to give you an example and the University certainly is one partner that
you’re blind to on this org chart. This
org chart is just the Health Department, but CHIRP, in all those slides that
Kathy showed you, involves the University community and Children’s Hospital in
Denver and Colorado is fortunate in that we have only one large institution,
unlike New York, California, Texas, other states that are dealing with multiple
institutions. It’s a little simpler for
us, but there’s that partnership and I kind of wanted to re-emphasize what
Kathy Watters said at the very beginning.
This is really sort of a multiple partnership type of thing. This is the Health Department itself and, of
course, above that is the Governor and the Health Department is--some of you
have commissioners, it’s a Secretary, it’s a cabinet-level type of
position. We are actually in this division
of the Health Department, which encompasses your standard Title V sort of stuff
that most of you are involved in. All
of the things that Kathy described are under here in Children with Special
Healthcare needs under her. We’ve got a
huge other here that I think is rather interesting in our case and it relates
to some of this data integration. This
other, our group of chronic disease functions and they’re all in this
Preventive Services Division, because the whole lot of it is oriented towards
prevention in some fashion and one of the things that we dither about a lot in
the arena of Children with Special Healthcare Needs is transition and follow-up
through adulthood and that gets another question that you asked, “Do we intend
to use this forever?” and take a big gulp and say, “Yeah, we kind of do.” There are issues about how to maintain this
system. Somebody was asking questions
about all of the fiscal stuff. Right
now it’s grant funded. You know,
between Kathy and I, we’re sort of committed to figuring out how to maintain
that through the block, but honestly we don’t quite have that figured out yet,
but we have the potential to link with a lot of other. We were talking about obesity this morning. Well these folks have an obesity function
and we could, conceivably, have CHIRP modules that follow childhood obesity and
then connect them to similar types of things in adulthood. There’s just huge potential for integrating
further and you can see here that when Cathy Gunderson was talking about laboratory
services, well that’s actually a division that’s separate from us, but it
communicates with us in several different ways. I’m going to redefine a term Cathy was using, the term, I think,
Handicap Registry? You may be more
familiar with it as a Birth Defects Registry.
They both become politically incorrect terms and that’s why we have this
really weird name that we have to explain to everybody. That’s actually in a different
division. The Birth Defects Registry
is, along with immunizations, is in the Disease Control Division and so in this
partnership, we’ve got partnering with the University and then partnering with
several different divisions within the Health Department and I think that adds
a lot of strength and, in addition, as Kathy said, here we have IT people,
epidemiologists and program folks all working pretty much together and we’re
dragging a few other people within the Health Department along with us and we
think those are strengths, including the bit with the University, in our situation,
at any rate. It can be cumbersome if
you’re dealing with University IRB’s, but we have our own cumbersomeness and I
just wanted to show this quickly. What
this is really about is how we’ve actually used differing funding sources to do
this. Most of what Cathy Gunderson just
described to you came from the CDC EHDI project, integrates these screening
systems I’ll show you in a moment.
We’re developing an Immunization Registry, it will also integrate that. A variety of clinical databases and then the
IRIS system that she was describing out in the local health departments, that’s
also integrated in that field case management module. We have one of the new Maternal Child Health Bureau genetics
implementation grants, and that’s being--really, it’s playing off of this whole
integrated data system that you’ve just seen and we’re going to be using it to
assure long-term follow-up and the presence or absence of a medical home for,
initially, kids who have had metabolic screening, a least selected birth defects. We’re picking cleft lip and palate to follow
initially as a model, some other genetic conditions including the kids with
congenital hearing loss, many of whom actually have genetic markers of
non-syndromic congenital hearing loss, about 50% of it is related to something
called Connexon-26, so we’re actually going to be able to do follow-up all the
way to the medical home with most of those kids. And what we’re really thinking of this of, we can add other modules
to this thing and we’re building something--I, I’m not sure that Peter Van Dyke
coined this term, but maybe he did, we’re building a form of a child health
profile and, in a way, something that we’re seeing as a bit of a virtual
medical home. We’re going to try and
follow and track the real medical home, but we’re trying to set up a virtual
medical home and that’s a bit of what this is about. Again, Kathy showed you how the information flows from the
hospital through the metabolic screening laboratory into NEST, electronic birth
certificate information populates the Newborn Hearing Screening Registry, that
goes through the NEST. Then that
information can come out here to the clinical entities who will sent their own
electronic chart up, a portion of which can come back to us and if we need to
follow a kid that they’ve lost, say in cystic fibrosis, we can zing messages
out to this case management piece. A
local public health nurse, as Kathy explained, goes and finds them and then can
zip information back through the NEST all the way back to--well, our follow-up
people here centrally, but in addition to the clinicians at hospital. The other functions then here are the Birth
Defects Registry and there’s a data exchange there and finally a developing
Immunization Registry. I’m sorry, that
is not the final piece. The other piece
that really has intrigued me from the start of this is right here. We’re setting this up so that eventually we
want to set up a registry of primary care providers. If they’re on that registry and a mom walks in with her babe
that’s not been seen in the office before, they can get into this system and
scoop up newborn screening results as well as any immunization data on that kid
by virtue of being on the registry and there’s also a way, I guess, if they’re
not on the registry for them to register at that time with mom’s
authorization. There’s even the
possibility that we’re envisioning, of running information back and forth on
some of these special needs kids between the medical home and the sub-specialty
care givers electronically and that, you know, that’s a prospect that really
intrigues us. It could--I don’t know, I
am a clinician and I still practice and it is absolutely maddening to try to
get records for someone that you’ve never seen before. It takes months usually. This could have the ability to just short
circuit that whole thing and I think one of our big draws to get people into
this ultimately will be the Immunization Registry with the added benefit of
being able to see newborn screening results, which also don’t come back to the
primary care provider because usually they’ve got a doc that was a delivering
doc on them and I think that’s true in most states. So these are really the sorts of other things we see this doing
and I think we’re done, except for questions and anything Kathy has to
say. Yeah?
Unidentified Speaker:
(Inaudible).
Bill Letson Yeah.
Unidentified Speaker:
(Inaudible).
Bill Letson Yes. Yeah.
This is all dependent on a Web-based system and what--one of the clunky
things in our system, Kathy mentioned right now the public health nursing
access to this bit is Citrix and I don’t know how many of you have dealt with
Citrix. It’s kind of awful. Once this becomes Web-based, and the whole
system will be Web-based, our Immunization Registry is already a Web-based
piece still under development, but we’re making pretty rapid progress with it
and the entire thing will be doable over the Internet, which is really what’s
going to allow these folks into the system.
The development of the Immunization Registry actually aimed itself
initially at rural practices, so they took the worst of the technology and
figured out how to make it work and, to a large extent, they’re working with
funky stuff like billing systems that they’re using electronically. So we can get almost anybody into this
thing.
Unidentified Speaker:
(Inaudible).
Bill Letson Yeah.
Unidentified Speaker:
(Inaudible).
Bill Letson Right.
Unidentified Speaker:
(Inaudible).
Bill Letson Right and
for states that have not gotten into this, our discussions with CDC have
indicated thus far that they’re willing to share code with this, that’s kind of
the understanding that we went into this with, so if you’re interested, you
know you can check in with us. We’ve
all got cards and things and can leave them.
It could save a lot of program time and money, programming time.
Unidentified Speaker:
(Inaudible).
Bill Letson Yeah.
Unidentified Speaker:
(Inaudible).
Bill Letson We’re
struggling with that, too, and with the whole argument that maybe the initial
access number should be the metabolic screening number.
Unidentified Speaker: All of ours
is.
Bill Letson Is it? Yeah and many states have gone that way for
exactly the reason that you say. Our
average for the EBC is about eight days.
The other thing that we’re looking at doing, actually, is our Vital
Records people are in the process, it’s probably going to take a couple of
years, but in the process of acquiring a Web-based system for the electronic
birth certificate and once that’s done, then our plan is to have hospitals
enter the basic demographics right off the bat, shoot that over in 24 or 48
hours and worry about the rest of the stuff later.
Unidentified Speaker:
(Inaudible).
Bill Letson Yeah.
Unidentified Speaker:
(Inaudible).
Bill Letson Right. Yeah and it can be and frankly, I mean,
people have mentioned BT at this meeting.
We’re trying to work with our BT folks on this to some extent. It’s a little tough because they’re
in--well, they’re sort of somewhere between IT and the Disease Control Division
and, you know, we’re trying to foster better connections for them. It’s not the easiest of things, but it
offers huge potential right now and some funding too, potentially.
Unidentified Speaker: (Inaudible).
Bill Letson Oh, oh,
yeah. Right. Apologizes from Marie, she had to leave. So do I as a matter of fact, so I’m--there’s
airport stuff, but if you have other questions, actually Kathy’s going to hang
here a little bit. The other Kathy’s
taking me to the airport. Thanks.